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4.30.2010

I had my big fancy consulation with the big fancy movement disorder specialist at Rush today. Everyone was very nice, etc. etc.
The verdict is that there is no sign of a neurological disease or damage. Rather I have what is variously termed a Functional Movement Disorder, Psychogenic Movement Disorder, or Conversion Disorder. I am choosing to use the term Functional Movement Disorder (FMD) for reasons that are probably clear to many of you or will become clear as I explain further. (Incidentally, I have in the past few hours found the website linked to the most useful and informative of the available resources.)

According to the doctor at Rush and most other sources regardless of the name they use, this is a disorder triggered in part by stress in the sense of biological or physiological stress as well as psychosocial factors and probably other predisposing factors. Patients may or may not have co-existing psychological problems like depression or anxiety. It is not something we do to ourselves or that we can consciously control. It is not a personal weakness or character flaw. It's not something I could necessarily prevented or that is in any way my fault. (If it sounds like I'm trying to convince myself as much as explain things, congratulations, you win a virtual cookie.)

As an explanation of what is going on, probably the best comes from the website I linked above. If you think in terms of a computer malfunctioning you usually think of either hardware problems or software problems. Hardware problems in a neurological sense would be things like MS or Parkinson's or head trauma. You can see them and detect them with tests in the same way that you can often see computer hardware problems visually or detect them with diagnostics. Software problems can be more tricky. You can pop open a computer case and look all you like, but if the software is the problem, you aren't going to see jack shit. My problem and the problem of others diagnosed with FMD is more of a software problem. Somewhere my brain and nervous system are sending messed up signals that make me walk funny and my torso do weird things, etc. To take the metaphor a bit further, I think someone tried to install Microsoft Vista in me.

This stuff is fairly straightforward. Well, not really, but we'll pretend it is. I'm willing to run with it as a working theory. I accept that there are no clear signs of "organic" illness. The abnormalities in my MRIs can be explained by age, smoking, and migraines. My movement symptoms don't look like those seen with autoimmune disorders. My cognitive and fatigue and pain issues can be explained via a combination of Chronic Fatigue Syndrome, Undifferentiated Connective Tissue Disease, Hashimoto's thyroiditis, sleep apnea, etc., or by the FMD itself, though given how long the fatigue has been an issue (at least a decade, probably longer) and the positive labs on the other stuff, I'm not inclined to attribute all the fatigue issues to FMD.

I know in the past, as longer term readers or people rummaging in the archives will recall, I have been vocal about having major issues with a diagnosis of somatoform or conversion disorders and variations thereof. I will admit, I am still a bit skeptical. Maybe that's not the proper term. I'm frustrated by the lack of understanding about the disorder, the seeming inability for medicine as a discipline to get a handle on it even to the point of agreeing on terminology and definitions, let alone treatment. There is ongoing debate, tied to deeper issues of philosophy and theory of mind, etc., about whether this is "psychological" or "neurological" or both and what that means. Thus my anger at good old Rene and his stupid ass mind-body dichotomy baggage we're stuck with.

The doctor at Rush feels that it is not merely or purely psychological. My symptoms are no less real for not being caused by something like MS. Recent imaging studies have shown abnormal patterns of brain activation in patients diagnosed with FMD. Coming to accept that this may be the result of a combination of lower-level illness, undefined predisposing factors, and the immense psychosocial stress I was under in the months and years before and during the development of the various symptoms is not an instant cure.

The Rush doctor explained it as an alteration of brain patterns, one that could become permanent, but one that could also, hopefully, be re-patterned back to something approaching normal. Apparently a primary, successful approach is therapy (already doing it) and relaxation techniques (also already doing it) and self-hypnosis (that could have highly entertaining potential - any bets on whether I can convince myself to cluck like a chicken on cue?) According to him the best results in reversal tend to be in the first 5 years since onset. If we date my onset to 2007/8, which is a reasonable assumption, then hopefully we have caught things in time.

Here is where things begin to get tricky, complicated by the confusion over terms, over diagnostic categories (neurology or psych?), the lack of research, the lack of clear understanding of causes, etc. The Rush doctor sounded as though he were confident that treatment would be successful. The sources I've been looking at (all reliable medical stuff, not just random blogs) suggest it isn't that simple. It's a long, challenging process. Many people have recurrences. Some have symptoms that never resolve.

So, I find myself still in a bit of limbo in regard to what I can expect for the future. Obviously, things won't change drastically in the immediate future. The one thing that does seem clear is that treatment is a gradual process often with stops and starts and even the occasional regression. I am hopeful though. And it is an immense relief to have a name even if it does have a whole lot of baggage associated with how we as a society regard mind-body relations and mental or psychological illness, etc., etc.

I am also somewhat conflicted, though less so as the day has gone on. For the past two years I have identified as chronically ill and disabled and for a while I thought that identity had just been pulled away. I suppose this demonstrates just how preoccupied with the movement disorder stuff I have been in that I sort of forgot or discounted the other chronic problems I have going on, problems that are not likely to spontaneously resolve and that will continue to have a major impact on my life.

There is also the issue of psychosocial stress and it's role in all of this. Some of you know the history there. I was in a highly competitive, highly stressful graduate program. On top of that, my first adviser left the university under less than fabulous circumstances just as I was getting ready to take comprehensive exams and propose a dissertation. I wound up losing about a year of time with rescheduling and other fiddling. I then got involved with another project. The first season went wonderfully and I was prepared to work on the materials as part of a dissertation. The second season was, simply put, an utter disaster from a personal standpoint. It's probably best I not go into details but the two months in the field and several months after our return were among the very worst in my life. There is no doubt in my mind that this contributed greatly to the development of my FMD. And so now I'm trying very hard not to get furious about how I was treated and the stupid nonsense that went on not just because it sucked but because, from a certain point of view, it robbed me of 2 years of my life, made me fear my sanity, had me wondering if I had only a few years to live, and well, yeah. Obviously, there's nothing to be gained by apportioning blame. I do have a right to be angry, but it's something I'm going to have to get past. I'm sure it will make things even more complicated, but that's how it is.

Now we're mostly looking toward the future. I'm really hoping I'll be able to drive again or even ride a motorcycle. I would like to be able to work outside the home if I want to. I'd like think more about a teaching certificate or a library science degree. It's highly unlikely I will complete a PhD, especially not at Chicago. There is fairly good evidence that repeated exposure to stress can cause relapses or exacerbate FMD. Even if it didn't, I think I've had enough. I love Egyptology, but I love feeling good about myself and relatively healthy and sane a lot more. If I could wind up teaching history and anthropology as an adjunct at some community college I'd be perfectly happy. And the Etsy/Artfire shop is still a possibility if I can get my butt in gear with production. :P

I still have questions about how long we can anticipate this taking and whether applying for Social Security benefits is something we should consider. I haven't been able to work for 2 years. This diagnosis doesn't mean I suddenly will be able to and treatment is likely to take some time. And having at least some of the income the taxes I paid entitles me to would alleviate some of the psychosocial stress I'm under. It would also make it easier for me to access things like occupational therapy and job re-training or placement.

This isn't the end of the journey by any means, but at least it's a new waypoint and we'll get some new scenery (hopefully). I'm not exactly grateful for all that's happened in the past few years, but there have been some wonderful things that came of it. I learned to appreciate simpler things a lot more. How absolutely wonderful Tom is has been reinforced time and again. I had the chance to learn to craft with crochet and knitting and now spinning and sewing and print-making. I've made some wonderful, fabulous, funny, wise friends I would never have made otherwise. And there's been lots of quality time with Oreo.

The especially good news in all of this is that we aren't tied to Chicago for my treatment. That puts us a little bit closer to the dream of the homestead. And that makes me so happy I get tears in my eyes.

4.15.2010

I pulled the fiber out of it's plastic wrap first thing after I got up today and gave it a good rinse in luke-warm water until the water ran clear. Then I laid it out on a towel, folded the towel and walked on it a bit to press out the water.

And, finally, I laid it out on a drying rack under a ceiling fan and let it dry.

The colors turned out waaaaay better than I expected - very vibrant and rich. There were a couple weird bleed spots, but no big deal. Even better, though I don't think you can tell in my craptastic photos, I managed some decent purples, which are usually difficult to obtain as the dye tends to "break" into red and blue.

4.14.2010

Part of the birthday present I bought myself was a drop spindle and some fiber to spin. I decided on undyed fiber because it was less expensive and because it would give me an excuse to try dyeing it myself.

This is easier than it sounds - lots of people dye protein (like wool and other natural fibers) yarn and fiber with Kool-Aid or similar powdered drink mixes or with food-coloring or icing coloring (same thing, different form). These are all types of acid dyes, which can also be purchased as powders for more "professional" use, but Kool-Aid and food-coloring have the benefit of being cheap and easy to find on a whim and a bit safer to use in your kitchen. Acid is one of the keys here - Kool-Aid has acid in it already in the form of citric acid. Other options require you to add some acid to the mix - often vinegar.

So, after doing a lot of reading, especially of this article in Knitty by my friend, Samurai Knitter, I decided to embark on the project. I bought a pack of 4 liquid food-coloring drop bottles, I already had a jug of white vinegar, and I rummaged around for some suitable containers for mixing the dye.

Last night I split off about a third of my 4 oz of Norwegian top into narrow pieces, wound them loosely, and soaked them in a vinegar and water bath until this afternoon.

Then I laid them out on a towel to dry a bit and then laid them out on plastic wrap.

I mixed up some colors in hot water and a bit of vinegar.

I decided I wanted to "paint" my dye on so I'd have multiple colors in the same strand. I tried using a sponge brush to see if that would provide a bit more control but no go, it just grabbed at the fiber and sucked up dye liquid.

So, I wound up pouring. The little paper cups were a lot easier to do this with than my little glass jars and they held up just fine. At first I kept careful note of my mixes. Near the end, I just started playing though.

It wasn't as messy as it could have been and in the future I don't think I'll pre-draft my fiber quite so much - all those narrow bits were a bit annoying to work with, but I wanted a smaller scale test batch before I go whole hog.

I did the pouring in stages over several hours - dinner was ready about mid way through and my back wanted a break (and is still making it's displeasure known). I doubt that should make a terrible amount of difference.

Everything is all wrapped up, put into the glass baking dish, covered with a bit of foil and stuck into the oven for an hour. Hopefully it won't need much more steaming than that.

I'm really looking forward to the result and getting to find out how concentrated the solutions need to be to achieve certain hues and how my mixes turned out and if my plastic wrap survived the ordeal, etc., etc.

I was good for the early part and wore gloves, but they started to irritate me so I took them off. Yay, blue fingers and it isn't from Raynaud's!

Oreo avoided the area while I was working, so I didn't get a chance to see how the dye would take on *his* protein fibers.

4.12.2010

The Adler Planetarium, Chicago, IL is hosting some special events in Chicago and online, including Jim Lovell "taking over" the Adler's Facebook fan page and Twitter feed, a panel discussion this evening (tickets available at the link above).

Apollo 13 launched in April 1970, intended to be the second manned landing and exploration of the moon. Sadly, the public had already lost interest in NASA and the Apollo program, despite the first landing having been only a few months prior in June 1969.
The crew consisted of Commander Jim Lovell - his fourth flight; Command Module Pilot John Swigert, and Lunar Module Pilot Fred Haise, Jr. Swigert was a last minute replacement after the original CM pilot, Mattingly was exposed to rubella and there was concern he might come down with it during flight. It was the first space flight for both pilots.
The mission went smoothly until 2 days in when the crew was asked to stir the hydrogen and oxygen tanks. In space, the contents got "slushy" and separated making estimating quantities a bit tricky, among other problems, so standard procedure was to stir it every so often to mix it up a bit. Unfortunately, an electrical short ignited the tank insulation, the fire raised pressure in the tank dramatically, and, well, boom.
As a result, the moon landing was cancelled, the crew was left with only minimal power for the main (command) module due to loss of the hydrogen and oxygen needed for power production, and it wasn't even clear if they could successfully return to earth.
The crew in Mission Control worked feverishly trying to puzzle out a new mission plan, figure out how to get the crew home, and figure out how to implement changes in the plan successfully. One of the first decisions was to shut down everything in the command module to conserve power there for systems that would be vital for re-entry and move the crew into the Lunar Module as a "life-boat" - a very cramped, moist, damp life-boat meant only for 2 people for a limited time that now had to accommodate 3 for an extended period.
There was debate over how best to bring them back - attempt a course change to bring them back directly or continue to the moon on the "free return trajectory" that would require minimal course changes. The free return took a bit longer, but was in many ways safer - they had no way of knowing how much fuel was left for the maneuvering jets or even if they could successfully fire them with sufficient precision to manage a direct return.

Once that was settled, things calmed a bit until the realization that the carbon dioxide scrubbers in the LM weren't up to the task of maintaining a breathable environment for 3 people for a sufficient amount of time. In a show of awesome ingenuity, the engineers back on Earth took a look at everything they knew the crew had available on the spacecraft and cobbled together a solution using the scrubbers meant for the command module and managed to explain how to build the crazy thing via audio. Imagine trying to explain how to build an unfamiliar device to someone when you can't see them and they can't see you - awesome! That and no fancy calculators or computers and no internet. Just caffeine, nicotine, and slide-rules, baby.

The "mailbox" in place in the LM. Why, yes, it does appear to be made of WIN and AWESOME.

The remainder of the flight was long, cold, and dark - everything non-essential was powered down, including heat, which caused condensation to build up. Poor Haise wound up with the urinary tract infection from hell and got to deal with the poor conditions while spiking a fever. No one could sleep very well being so cramped and uncomfortable and, oh, I don't know, being a wee bit stressed out.
They did though - after some tense moments when radio silence during re-entry lasted a bit longer than estimated, the crew made it through to splashdown. It's probably one of the finest testaments to human ingenuity in history.

Yeah, cigars are definitely in order here. Really, I think they could have brought in hookers and blow and no one could have said shit.

4.05.2010

So, I got my first project done with Francis (and there's a photo of her all set up too!) I wanted to put up little curtains around a plastic shelving unit we have in the kitchen to make things looks a little neater. So, I cut and hemmed 3 panels (one for the side, two for the front) and used Velcro strips to attach them - we found some that had one side sticky and the other side sew-on. Sewing the Velcro was a bit of a challenge, so the zig-zag around it wasn't in exactly straight lines, but that's hidden so no big deal.

4.04.2010

Secondly, being 30 is pretty awesome so far. I have my new sewing machine, which is awesome! I set her up the other day and went through the manual and tested all the stitches on some scraps. I even made my very first buttonhole.
I picked up reference book Sew Everything Workshop which has already come in handy for some basic tips and have started working on some curtain panels I've been meaning to make for 6 months.

We had a pajama party last night and an ice-cream cake from Cold Stone Creamery. Mmmmmm, ice-cream cake. We also tried teaching people to play Wii - that was hilarious in its own way. Also, boxing is *exhausting.* Lots of fun. Also, I got chocolate and tea and a lovely gift card. Sweet!

The past few days, especially when I've felt crappy otherwise, I've been shopping online. I placed most of my orders today:
Some sock yarn (some for Tom and some for me), a chart keeper, some more stitch markers, needle protectors, and the book Respect the Spindle: Spin Infinite Yarns with One Amazing Tool from Knit Picks (all their books are on sale for 40%, so it was actually less expensive than Amazon).
After much hemming and hawing and research and dithering, I decided to get a Schacht Hi-Lo 1.1 oz spindle and 8 oz of undyed wool roving from Paradise Fibers, half in Blue Faced Leicester and half Norwegian. Both seem to be recommended for beginning drop spinners. The Hi-Lo can be used as a high or low whorl which is also cool and is nice and light which seems to be a highly recommended feature as it allows spinning of finer gauges. Interestingly, as I was looking into historic spinning techniques, it seems that the ancient Egyptians and Mesopotamians preferred high whorls spindles while the Anatolians and Greeks tended to use low whirl and Levantine peoples, being in the middle, perhaps used either as it suited them.
Both types of roving are amenable to Kool-Aid dyeing, so I should be able to have some fun once I get the basic hang of things and play with color as well. I am already drooling over other types of wool, other fibers, and various colors.
I also ordered two skeins of Super Kydd from Elann, one in red for a gift and one in green to make something for me. The red is to make Wisp from Knitty as a first lace project and as a gift (yes, I know, using mohair may not be the best idea, but I'm planning to do some practice swatches/wash clothes with cotton before I jump in. The dark green is to try Ice Queen, also from Knitty, for myself.

I think I should have plenty to do for the foreseeable future. Now if I can get going on my motivational problems, I'll really be doing well. :P